I could make you understand

So... this week. I'm not going to get into parts of it now, it's been both good and bad.

I want to write about something else a bit today. Lately I have not wanted to speak much on many issues. I feel like instead of turning mid-twenties as I did this week, I feel like I am at the end point in my life instead.

I feel both elated for the people I love and terribly bitter at my own fate and life. I hate hearing the voice inside my head saying "I told you so!". Bothers me.

Despite attempts when I was younger it seems I do not and will not have an "ordinary" life. There are many moments of happy calm and stability, but then there are those deep seated moments and days of terror, the dark long nights of tears for fear of a lack of tomorrow, the amazing feeling of just existing with another human being. There are constant stresses and worries. I am torn in so many directions so often I keep losing track of my own self.

Humans all define their own happiness- mostly based on their social construct, but also upon personal tastes. I often wonder at night when perhaps I should be sleep about my own happiness and what will become of me after he dies.

I feel so used most of the time. Used up. The people I associated as friends have mostly abandoned me. The friends who stayed to support Wash took me in. It seems... imbalanced to me how people treat the ill person and their caregiver. Sometimes people offer to "help". That is true. Generically. It is left up to me to separate tasks, assign them, follow up, double check, verify, confirm... it's easier for me to just attempt to do everything and burn myself out than it is to try and figure out how to explain and assign the help I need.

I wish someone would offer to help with laundry. Even just folding clothes.

Or making us a meal once a week. With regularity and reliability. Someone to take Wash out for a few hours once a week so I can have a break.

Someone to offer to pick up his meds so I don't have to make a trip to the Pharm every 3 days, or week, or every day. Someone to specifically say "Hey let's take care of all the bills!".

But those people are absent from my life. I have to find the tasks, and then people who are willing to do it, and ask them, and then hope that not only will they follow through and help, but that it doesn't come at too much of a cost to me. So far it seems like much of 'help' offered comes with some attachment.

Why does it take more work and responsibility on my part to allow for someone to try and make it less? I just don't get it.

I don't understand people. I don't understand relationships.

There just are not enough descriptive words to express it all.

I feel like it was my 64th birthday this year.

What is the Meaning Of Life?

- I get it now. It's a very good "haha joke is on you" answer.

Obligatory Post

Happy Birthday to me.

I plan to do as little as possible and laugh as much as I can.

And no ambulance rides this year.

Quick Reminder

The benefit for Wash is this Sat, so if you are local to us come on out and say "Hi".

And fold some motherfraking cranes to help. ;) Please.

Again, if you can please we are still accepting donations. His cancer hasn't gone away and neither have the medical bills. If you cannot we would also love prayers or postcards.

The link to the event info is here;

http://www.facebook.com/event.php?eid=116806221713430

360 days

I don't feel like I am 'coping' or that this existence is 'living'. I do not resent my friends and family for being able to live; to get married and have a wedding, to get pregnant and have a/more child(ren), to have a savings and be able to travel, or go out for a dinner or to a movie...
But I wonder, I wonder if they even stop for a minute every.single.day. and know how lucky they are. Are you truly thankful and can you see all the wonders you have?

My problem is I cannot always let go of the pain at seeing people Live, and knowing that it will never be me.

360 days ago I ceased to be me.

I don't know what I am anymore.

Roll the Dice

Short entry for now, I will come back after a good nap to write some more. Have been fairly busy the last few days getting events lined up, things timed right, errands done, 5 loads of laundry wash, dried, and I folded every.gorram.bit.

Lots of stuff. I'm a little behind on my written correspondence but I will be doing that shortly. It's important to me not only to keep in touch with a few people and start sending out my thank you notes from birthday cards, but I have a friend who lives now completely across the country. And I really consider her a friend. And I miss her a lot, and the conversations we had- she's brilliant- and I really just want the time to pass by so I can see her and hear about all the wonderful and great things she's been up to. So I've tried really hard to send her a card almost weekly. And I've lapsed a little, so I am going to make myself do one tonight.

Speaking of, I've been thinking and reflecting on my birthday, and the various anniversaries around it. Not many outside my family know but my grandfather (Saba) whom I was very close with shared my birthday. I was a bit early- maybe two weeks- and I like to think I just really wanted to 'crash' his party and share it as well. It certainly gave me a bonding point with him that aches every year as well.

Wash is trying very hard to do something good and nice for me. I know this. I wish for myself to be able to let issues go so I can enjoy and be thankful for his effort and work and not just fear the whole episode. Irrational fears are the worst, as I base so much of myself in reality and the literal.

It's hard to write of the daily pain of striving for some status quo, some level of 'stability' in a world where there is total certainty of a short (hopefully not too painful) death around the corner. It is hard to convey to others that when eventually he goes a part of me will die too. Some days I fear it is too big to keep going after. If a Time Lord can't really live without two hearts, can I survive when I lose half of my one? Questions, always questions. Does the madness spread inwards until I destroy myself, or will it fan out burning out all of humanity, the world?

These are things I do not know. These are hypotheses that may not even come to pass. But the ideas are still there none the less. They stay swimming in my head, submerged in low water floating and treading until the still of the night, or a calm moment when they chose to rear up and bite into my small amount of self security.

How does one describe that the worst day of their life is every single day since then- that the day replays over and over never changing always that idea of fear, that dry and almost salty rusty taste in the mouth with the memories of the choices and the consequences?

Does English even have a word for that?

Leaving that aside for a moment, we have a friend in town this week and it's kickass. We actually need to show her that one. She came in for a business meeting but is seeing and visiting us in the time in between. It's beyond wonderful really to have someone to talk to, to listen to. She's someone who's been personally effected by a loss to brain cancer, so she can really appreciate the unique situation it places on people. It's a sad feeling to have to realize and know that perhaps without a death we would not really know of each other, but there is good in that as well to know that friendship and help, and positive things have come of the end of a life.

It's great to talk and play and see other total geeks out there like us. Honestly, I thought watching Caprica last night was even better with another friend on the couch.

So, I have her for a few more days, then Wash gets his benefit, the weekend ends and it's my birthday.

I will get back to that idea later.

Excellent. Wash is off at a long doctor visit and I have the whole place to myself for another hour.

Now I can do all the crying I've been holding in for a day.

I wish I knew how to let other people's hatred go.

Celebrity, Sex, and Fascism.

I'm really too saddened and depressed to talk about much.

Right now with very few exceptions I am holding a lot of anger and rage at anyone who is healthy, older than 26, has a child, has a partner, has a job, has any kind of future. Who has a completely filling and 'done' life by 30?

I will never know what it is really like to be a man. I can imagine, but I don't really get it.

People who are not living with a young, dying person, or not living and caring for someone with a severe brain disorder/trauma/disease... they just don't.get.it.

He doesn't have time. Or a child. Or a job, or much of a long term future at all. We can barely afford chemo and medicines and co-pays, so he really doesn't have much material to hang on to.

All he has are words and memories.

And he's had yet another day of that robbed. As have I.

I'm just sad and tired of it all. I know there are good people out there in the world, but why do the awful humans have to be so loud?

Cannabis Talk Time ep 1

Imagine

Happy Birthday John.

This year may your dream come true. Hug someone today. Tell every human they are loved and wanted.

Imagine Peace.

Wash wrote an article!

http://persephonemagazine.com/2010/10/05/an-introduction-to-chemotherapy/

Another round of "Meet The Aspie"

Been having some issues lately. And, as this is here not only for me, but for others in my situation I will be truthful and elaborate.

My birthday is coming up at the end of this month. It will mark the one year anniversary of Wash's day of Seizures and his hospital stay, tumour discovery, and brain surgery. Not a good day for me and certainly not the best memory to have and hold to of my birthday.

So, for me there is great trepidation coming up to celebrate or even mark it again.

This caused some contention the other day when Wash was trying to ask me to decide or give input on what I wanted to do.

"It would be an amusing coincidence for it to happen to me again. Do you really think that's going to happen?"

Well, I have no idea. Maybe. I never thought he would have a seizure in the first place, or get a brain tumor, or have it be cancer, or that it was end stage. To me, suspecting that is irrational. What's not is to understand that if it can happen once, it might again, and if the odds were frakking millions to one for the first time, it could easily happen again.

This is the way my brain works. I look for patterns, repetitions in the world and words and actions. I read statistics, but look at the larger figure as well. It seems to other people- Wash has told me- that it is effortless and intuitive but I am not. I do not read minds anymore than I was really the "witch" kids used to call me in elementary school. It's just that there are always 3 or 6 different trains of thought constantly going in my brain to look for the patterns everywhere, of all behaviours. It seems to be intuitive because my brain is loud to me, but very silent to others. It happens so fast it seems suspicious.

Sometimes when we are watching a new episode of a show- really any show I've seen a whole season of- or a movie written by someone who's other work I am familiar with I will feed in the dialog of the characters before the speak. Correctly.

Do I "read the minds" of the writers? No. I just simple have an almost eidetic memory and a very cursed brain that reads the patterns of what has come before to predict the behaviour or conversation.

Sometimes this really pisses Wash off. I will finish his thoughts and he gives me a stink eye.

I wish I could stop it. It takes a lot of joy away from living when I spend all my time just thinking.

So, my birthday. The start of the autumn/winter holidays. I cannot control my fears. I sometimes give in to anxiety. But despite my love of the rational I am allowed as a human to feel things, to have these irrational and alien feelings. Last night was hard as for a few hours he just would not listen or respect my feelings. Some perhaps are irrational and just fueled by fears. But some are very very real with very very hard consequences, and it just made me so sad and angry to no end that he would not even listen to what I had to say.

We eventually did talk it out, but for me some times are just so hard. I am put in a situation I have not seen, heard, or read before. I do not know the appropriate responses always, or the next step, or how to deal. It's an entirely new situation for me and I really hate those. I know that part is my burden, but we as a couple have to work very hard to understand each other. Sometimes he just cannot fathom the disconnect for me, what comes to him so naturally and unconsciously for me with Aspies takes constant work and concentration. I have to think and process before every response and though I am fast at it, I have to literally think everything out, when he can just react.

I admire how easily he can feel emotions and think and speak all at once. I have to separate myself, pull up my rational part that tends to stay in control. The rational part is the part of Tashi that functions. The irrational breaks down and rocks. Or counts rice. Or cleans. For me it really is two parts that have to work to make a whole. To me it seems that other people, humans, can just be. Exist to both feel and think at the same time. Boggling.

First morning of chemo week and he survived. Hoping the nausea drugs are worth the $54/pill cost. I am thinking though from his slow pace and climbing nausea that he will be in bed for today and I will most likely be reading to him.

I am still figuring out what to do for my birthday.

Talk is cheap

Gorram you guys.

I have 6 of Wash's 9 chemo prescriptions picked up today. So far that's $4200 and change.

His new anti-emetic (the old one stopped working) costs $54 per pill.

And I get 2 pills (one day supply) at a time.

As if I had so much free time on chemo week to be able to visit the pharmacy every.single.day. for at least 6 days to pick up pills.

$54 a pill! That's to make sure he keeps down the $320/pill chemo meds he takes.

Nope, no issue at ALL with Healthcare costs. (I am not referring to the R&D costs or the Generic/Name brand issues. That's another rant)

Quick survey- who here in the 22-29 age range has set aside $5000/month for Cancer related costs?

Ya know one year ago I didn't think I had to.

I actually had to say this today- "No honey we can't buy you cereal today. We don't get food stamps for two more days and I have to get your chemo meds today."

Is it disturbing that as an American I have to choose to feed my dying husband the food that helps him and keeps him happy and not sick, or put off getting his other medicine that keeps him from getting sick and dying?

I kinda think it is.

His age really frakked him over. And of course, getting a really rare and fatal type of cancer.

Dying of brain cancer is just so gorram unfair at 26, having to do it from well below poverty too... I thought we were a First World Country?

Where is his Right to Life, Liberty, and Pursuit of Property?

They've all been taken away.

I hate it so much. I wish I could do more for him. I wish I had more to do more for him. But I'm young too, and option less right now.

Updating the Carbon

It has been so NICE to just.... disconnect this week.
Wash and I have just spent a lot of time together. Reading and talking.

It was disconcerting at first, but quite honestly as much as I did miss talking to a few people the time he and I have had together from this was just so wonderful. We read a lot to each other. And had good time for good talks. About possible futures and ends. Decisions and ideas and wishes. All those things people who have the luxury of time and health to not worry about or want to speak of. What they forget and choose not to celebrate we tried to remember and enjoy. For some parts it felt like we were dating again. It was wonderful to be able to make him laugh that much, to giggle, to enjoy hearing him expound on Jupiter and its orbit this week or my passion about learning of ethics and religion. I don't mean to "bogart" him per se, but I do not regret time spent with him and even some time apart. He has his own projects to work on this month.

Now, I do also have news. I got accepted into a small local History and Ethics class (2 credit hours) but this is the first time since before Wash's diagnosis that I've thought or tried to go back to school. I am scared shitless but also excited. It's been ages since I've been in a learning environment like that. I cannot wait to be learning, reading, writing, discussing. I have homework again, and assigned readings and work. I love that part of school. I am nervous to be around students again though. People my age seem so different to me now, and I suppose I am quite different from them. My identity has changed and not really settled in yet, so when asked to speak about myself or who I am, it's hard to properly articulate myself. Since it is a small class though I am hoping to mitigate those issues.


Wash starts chemo again on Mon and there's now 25 days to go until my birthday and the 1 year anniversary of his giant gran-mal seizure that led to the discovery of his tumour and cancer.
He cannot understand why I am nervous or worried about any type of "party" or the like this year.

Is it irrational to have a fear of him getting ill again? Perhaps. But then again him getting stage 4 GBM at age 25 was pretty gorram irrational as well.

I didn't celebrate about 10 years worth of birthdays. I kept having bad accidents occur around and on my birthday so I decided if I did not celebrate or mark the occasion nothing bad would take place. Oh how young and naive. Bad shit happened. It will again at some point.

I don't even know what material things I'd want- there's one new book out I ACHE for. C'est tout. My basic *needs* are mostly met. The rest is what?- want of material things? Who has time for that? I do not, so I don't spend much time thinking about wanting things- just always and forever more time.

And the other thing I want and cannot have- a child with him.

I've been allowed/encouraged by my health insurance (now with even MORE cuts! yay!) that I can go down to once a week PT for my knee. Honestly and actually it is getting better, but I quite resent the insurance getting to tell me when to stop rather than say my doctor or physical therapist.

I blame Jan Brewer and Joe Arpaio directly for this. Fighting, mismanagement, and flat out robbery of State funds that takes care directly from Wash, me, and other NO INCOME families and spends it on lawsuits, or dress suits, or Honduran Holidays.

I think one of the few things I have to keep me going and alive after Wash eventually goes will be my suit against the State of Arizona and its players in my husband's death.

The debator in me, the State ranking Speechie, the Aspie who studies law in me... they are ripping for a fight, and gorram it, it will be a doozy of one.

But enough of the shite of the world. That's why I took some time off. Focus on the love and care I still have sitting right next to me.

Still here and still fighting y'all.

OH! And of note, to the no longer Anonymous reader who has been shit-talking me? Reading comprehension is your friend. I laugh at the blatant and childish lies being passed around. I will just sit back and let my other readers armchair guess what is wrong in the psychology of someone who lies about a terminal cancer patient.